Medically complex children in Canada
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- Published on Sunday, 29 November -0001 16:00
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PAOV — You can make a difference. Sign now and help this petition win.
Support the Petition for Nursing Funding for Santino and Children with complex care needs
876 have signed Maria Tumambing’s petition. Let’s get to 1,000!
Sign now with a clickAs Santino’s mother and a rare disease advocate, I demand change for my son and all children with special medical needs in British Columbia. These children require additional assistance... and resources to thrive, and we cannot allow them to be overlooked any longer.
We call on Adrian Dix, Minister of Health and Mitzi Dean, Minister of Children and Family Development, and other relevant officials to provide permanent funding for licensed nurses, allowing parents and caregivers to work while ensuring that children with complex care needs receive the care they need to survive. Santino has a rare genetic condition called Haddad Syndrome, which mandates round-the-clock care through a tracheostomy (breathing tube) and a ventilator. My husband and I have faced the arduous task of providing the care that Santino requires to survive, and this has caused significant stress and hardship on our family. We need support to ensure that Santino receives the care he needs while also being able to provide for our family.
We also ask that funds be allocated for training of staff members in preschools, daycares, and other non-academic organizations that are institutional for children with tracheostomy and ventilators. Every child deserves access to adequate support and resources no matter where they are.
We demand sufficient respite benefits to alleviate caregiver burnout. The emotional and financial burden of caring for a child with complex needs is immense, and we need support to avoid caregiver burnout. My husband and I have had to withdraw Santino from preschool due to the lack of resources, and this has caused significant stress and hardship on our family.
Finally, we ask that the Ministry of Child Care and Development create a system of individualized support where funding meets each individual child’s specific needs. Santino and other children with special medical needs have unique requirements, and it is essential that their care is tailored to them. By doing so, we can ensure that every child with special medical needs has the opportunity to learn, grow, and thrive.
We urge Adrian Dix, Mitzi Dean, and other relevant officials to recognize the importance of providing adequate support and resources to families with children with special medical needs. We implore you to take action to ensure that Santino and other children with special medical needs receive the care they need to survive and thrive. By doing so, you will help build a more just and compassionate society, where every child has the opportunity to reach their full potential.
Sign this petition to demand that the Ministry of Child Care and Development allocate permanent funding for nurses, allocate funds for training, ensure sufficient respite benefits, and create a system of individualized support for Santino and all children with special medical needs in British Columbia.
Thank you for your support.
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